Organizing for Access: The Agua Buena Human Rights Association

The desperate need for antiretroviral medications in the countries of Africa has received a great deal of attention in the United States in recent months. Under pressure from activists, the Bush Administration last year announced a new $15 billion program for AIDS services in Africa (as well as Haiti and Guyana). The bill moved through Congress in record time and is now awaiting full appropriations (which remain uncertain).

Far less attention has been paid, however, to the needs of people in Latin America. Although most countries in Latin America have not yet suffered the horrifying levels of HIV infection seen in many sub-Saharan African countries, there remains an ever-growing need for access to medications.

Fortunately, a lone activist organization based in Costa Rica has been working since 1997 to expand treatment options throughout the region. The Agua Buena Human Rights Association was founded shortly after the 1996 International AIDS Conference, when psychologist Richard Stern learned that antiretrovirals were showing great success but remained far too expensive for almost everyone in the developing world.

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"I came back from the conference convinced that the people with AIDS should form a coalition to pressure the government for access to treatment. At the time the prices of the medications were close to $8,000 per year per person, and everybody considered it impossible that governments in Latin America would pay this kind of money," said Stern, who has lived and worked in Costa Rica for fifteen years. "But after a case was filed with the Supreme Court of Costa Rica, PWAs won the right to treatment. After that I began to do the same kind of work in other countries."

Organizing for Access

Agua Buena is a regional organization in Latin America and the Caribbean whose target countries are those where there is a continuing need for antiretroviral therapy, including Guatemala, Honduras, El Salvador, Panama, Nicaragua, Belize, Peru, Bolivia, Ecuador, Jamaica, Dominican Republic, St. Lucia, and Paraguay. Although the association is based in San Jose, Costa Rica, their home country is not one of the target countries since the majority of Costa Ricans now have access to treatment.

But Costa Rica, El Salvador and a few other countries remain the exception. In just the nations of Jamaica, Ecuador, Peru and the Dominican Republic, there are more than 55,000 people who have no treatment access at all -- about 95% of the PWAs in these four countries combined.

"Health care is the most basic human need and the discrimination against people with AIDS keeps them from getting access to medical care, including antiretrovirals in Latin America," notes Stern. "I am disappointed that change has come so slow. Six years have passed since the Costa Rican Supreme Court decision in 1997 that ordered the government to provide universal antiretroviral access; I never imagined that six years later, most people in Latin America still don't have access to medications."

Since few individuals or non-governmental organizations (NGOs) have the ability to pay for medications, expanding access automatically involves lobbying the government. The Costa Rican experience offers some hope. "In Costa Rica, people with AIDS have had great successes and they are now a truly empowered group with lobbying capacities," notes Stern's colleague Guillermo Murillo who is one of the nation's few publicly HIV-positive activists and a plaintiff in the successful Supreme Court case.

Still, despite the Supreme Court ruling and theoretically universal health care, Murillo states that the Costa Rican government does not have an adequate system of support for AIDS programs. "Strategic plans have been developed, but budgets are not assigned. The government doesn't support the non-governmental organizations working in AIDS, which makes our work more difficult. More education is needed. The government does not seem to be seriously committed to stopping the epidemic."

Still, such obstacles pale before those in other countries which are poorer than Costa Rica and with less of a tradition of peace and democracy. While Brazil has led the region in developing generic versions of medications and distributing them at government expense, most other governments remain indifferent if not hostile to the needs of people with AIDS. But the problems are not just with government policy, but also within the region's health care systems.

Combating Discrimination

"My biggest frustration is the indifference and/or discrimination level of people who are supposed to be running health care systems in these developing countries," says Stern. "In most cases, they themselves are from elite upper classes and have always had health care when they needed it. They seem to think of the poor as somehow different, as less worthy of receiving quality level health care.

Activism in the developing world is also far different from activism in Europe or the U.S. "Most of the emerging activists are poor because professional-class PWAs, with some exceptions, remain in the closet. They buy their medications in Miami and fear losing their jobs and status," adds Stern. "It's understandable; I don't blame them. But that leaves us to work and support people who may have never gone beyond elementary school or, in the case of women with HIV/AIDS, who may never have attended school at all. And these people are slow to trust and slow to change. But there is nothing more gratifying in our work then to see how these people do grow and change over a period of years, and see where they are now as opposed to when we first met them."

Still, Agua Buena has become a significant force in the treatment access movement. The association targets all levels of decision makers from leaders of NGOs to National AIDS Program Directors, to UNAIDS and the Pan-American Health Organization to Congressional representatives in the countries they work in. "We make demands strategically; for instance, we have filed petitions with the Inter-American Human Rights Commission in seven countries during the past year. We also support legal actions at a national level." The association also publishes a monthly treatment access bulletin and sponsors a Web site at www.aguabuena.org.

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